Clinical Research Oriented Workshop (CROW) Meeting: Oct 19, 2023

 

Present:   Justine Dee, Juvena Hitt, Emily Houston, Amanda Kennedy, Ben Littenberg, Charlie McLean, Jen Oshita, Liliane Savard, Adam Sprouse Blum, Connie van Eeghen (10)

 1.                   Warm Up: UVM tech can definitely be “high need for attention” units

2.                   Liliane’s Healthcare Transition (HCT) Poster for the Health Equity Summit at UVM (Oct 29): Because autistic young adults have a lot of medical conditions (autoimmune conditions, musculoskeletal pain, mental health issues, obesity, depression, cardiovascular diseases, addiction and suicide to name a few) and adverse health impact, we feel that increasing awareness of internal medicine providers to the transition challenges and research needs for this population is a priority.  There are 2 version of the poster and Liliane wonders which was best.

3.                   Discussion

a.       Audience: students, clinicians, investigators, administrators; not lay group

b.       Slide 1

                                                   i.      More fun and engaging but wanted more structure found on Slide 2

c.       Slide 2: has improved greatly

                                                   i.      Photo: consider cropping out the vertical bar

1.       Does it convey a message from the poster?

2.       After the objective changed (below), maybe it does?

                                                 ii.      Can the investigator remove extraneous words to focus and clarify meaning?  Divided opinions on this.

                                               iii.      Explain what “transition” is about

                                               iv.      Objective: Identify the research gaps to improve healthcare transition for autistic youth in VT

1.       Found transition models from other sources which were evaluated by VT users

2.       Gaps were discussed but not identified in a structured way

3.       New objective: identify attitudes towards potential approaches (not, what do they need – could be included because the focus groups were asked what was missing, which was the implementation research, as well as evaluation research done so far is not patient-centered)

4.       Include stakeholders (as in Title)

                                                 v.      Consider Background before Objective

                                               vi.      Several ways to trim the wording (every bit of ink, every sentence/phrase/word/punctuation/letter – if you delete it and it still makes sense, then leave it out – Ben Littenberg, 10/19023)

                                              vii.      Participation graphics

1.       Move all participants graphic to bottom left, under Methods

2.       Eliminate the age related graphic for autist people top right; move the information into the new bottom left graphic

d.       Reflection on the funder: a substantial budget for patient centered research with a lot of demands; this is the key job of the PI: to stay with the focus of the research and still engage and partner with stakeholders

4.                   Schedule for rest of the month:

a.       TBD

 

Recorded by: CvE